The COVID-19 pandemic has raised a host of ethical challenges, but key among these has been the possibility that health care systems might need to ration scarce critical care resources. Rationing p...

From a twenty-first century partnership between bioethics and neuroscience, the modern field of neuroethics is emerging, and technologies enabling functional neuroimaging with unprecedented sensitivity have brought new ethical, social and legal issues to the forefront. Some issues, akin to those surrounding modern genetics, raise critical questions regarding prediction of disease, privacy and identity. However, with new and still-evolving insights into our neurobiology and previously unquantifiable features of profoundly personal behaviors such as social attitude, value and moral agency, the difficulty of (...) carefully and properly interpreting the relationship between brain findings and our own self-concept is unprecedented. Therefore, while the ethics of genetics provides a legitimate starting point - even a backbone - for tackling ethical issues in neuroimaging, they do not suffice. Drawing on recent neuroimaging findings and their plausible real-world applications, we argue that interpretation of neuroimaging data is a key epistemological and ethical challenge. This challenge is two-fold. First, at the scientific level, the sheer complexity of neuroscience research poses challenges for integration of knowledge and meaningful interpretation of data. Second, at the social and cultural level, we find that interpretations of imaging studies are bound by cultural and anthropological frameworks. In particular, the introduction of concepts of self and personhood in neuroimaging illustrates the interaction of interpretation levels and is a major reason why ethical reflection on genetics will only partially help settle neuroethical issues. Indeed, ethical interpretation of such findings will necessitate not only traditional bioethical input but also a wider perspective on the construction of scientific knowledge. (shrink)

Moral enhancement refers to the possibility of making individuals and societies better from a moral standpoint. A fierce debate has emerged about the ethical aspects of moral enhancement, notably because steering moral enhancement in a particular direction involves choosing amongst a wide array of competing options, and these options entail deciding which moral theory or attributes of the moral agent would benefit from enhancement. Furthermore, the ability and effectiveness of different neurotechnologies to enhance morality have not been carefully examined. In (...) this paper, we assess the practical feasibility of moral enhancement neurotechnologies. We reviewed the literature on neuroscience and cognitive science models of moral judgment and analyzed their implications for the specific target of intervention in moral enhancement. We also reviewed and compared evidence on available neurotechnologies that could serve as tools of moral enhancement. We conclude that the predictions of rationalist, emotivist, and dual process models are at odds with evidence, while different intuitionist models of moral judgment are more likely to be aligned with it. Furthermore, the project of moral enhancement is not feasible in the near future as it rests on the use of neurointerventions, which have no moral enhancement effects or, worse, negative effects. (shrink)

Brain-Computer Interface is a set of technologies that are of increasing interest to researchers. BCI has been proposed as assistive technology for individuals who are non-communicative or paralyzed, such as those with amyotrophic lateral sclerosis or spinal cord injury. The technology has also been suggested for enhancement and entertainment uses, and there are companies currently marketing BCI devices for those purposes as well as health-related purposes. The unprecedented direct connection created by BCI between human brains and computer hardware raises various (...) ethical, social, and legal challenges that merit further examination and discussion. To identify and characterize the key issues associated with BCI use, we performed a scoping review of biomedical ethics literature, analyzing the ethics concerns cited across multiple disciplines, including philosophy and medicine. Based on this investigation, we report that BCI research and its potential translation to therapeutic intervention generate significant ethical, legal, and social concerns, notably with regards to personhood, stigma, autonomy, privacy, research ethics, safety, responsibility, and justice. Our review of the literature determined, furthermore, that while these issues have been enumerated extensively, few concrete recommendations have been expressed. We conclude that future research should focus on remedying a lack of practical solutions to the ethical challenges of BCI, alongside the collection of empirical data on the perspectives of the public, BCI users, and BCI researchers. (shrink)

The prospects of enhancing cognitive or motor functions using neuroscience in otherwise healthy individuals has attracted considerable attention and interest in neuroethics (Farah et al., Nature Reviews Neuroscience 5:421–425, 2004; Glannon Journal of Medical Ethics 32:74–78, 2006). The use of stimulants is one of the areas which has propelled the discussion on the potential for neuroscience to yield cognition-enhancing products. However, we have found in our review of the literature that the paradigms used to discuss the non-medical use of stimulant (...) drugs prescribed for attention deficit/hyperactivity disorder (ADHD) vary considerably. In this brief communication, we identify three common paradigms—prescription drug abuse, cognitive enhancement, and lifestyle use of pharmaceuticals—and briefly highlight how divergences between paradigms create important “ethics blind spots”. (shrink)

There is mounting evidence that methylphenidate (MPH; Ritalin) is being used by healthy college students to improve concentration, alertness, and academic performance. One of the key concerns associated with such use of pharmaceuticals is the degree of freedom individuals have to engage in or abstain from cognitive enhancement (CE). From a pragmatic perspective, careful examination of the ethics of acts and contexts in which they arise includes considering coercion and social pressures to enhance cognition. We were interested in understanding how (...) university students, parents of university students, and healthcare providers viewed autonomy and coercion in CE using MPH. We found that perspectives converged on the belief that CE is a matter of personal and individual choice. Perspectives also converged on the existence of tremendous social pressures to perform and succeed. Parents emphasized personal responsibility and accountability for CE choices, and expressed feelings of worry, sadness and fear about CE. Students emphasized the importance of personal integrity in CE, expressed tolerance for personal choices of others, and highlighted the challenge that CE poses to maintaining one’s personal integrity. Healthcare providers emphasized the health consequences of CE. These results illustrate: (1) the importance of understanding how context is viewed in relation to perspectives on autonomous choice; (2) the limitations of individualistic libertarian approaches that do not consider social context; and (3) the ethical implications of public health interventions in a value-laden debate where perspectives diverge. (shrink)

Gilbert and colleagues point out the discrepancy between the limited empirical data illustrating changes in personality following implantation of deep brain stimulating electrodes and the vast number of conceptual neuroethics papers implying that these changes are widespread, deleterious, and clinically significant. Their findings are reminiscent of C. P. Snow’s essay on the divide between the two cultures of the humanities and the sciences. This division in the literature raises significant ethical concerns surrounding unjustified fear of personality changes in the context (...) of DBS and negative perceptions of clinician-scientists engaged in DBS. These concerns have real world implications for funding future innovative, DBS trials aimed to reduce suffering as well as hampering true interdisciplinary scholarship. We argue that the philosophical tradition of pragmatism and the value it places on empirical inquiry, experiential knowledge, and inter-disciplinary scholarship – reflecting diverse ways of knowing – provides a framework to start to address the important questions Gilbert and colleagues raise. In particular, we highlight the importance of expert clinician knowledge in contributing to the neuroethical questions raised by Gilbert and colleagues. Finally, we provide illustrative examples of some of our interdisciplinary empirical research that demonstrate the iterative cycle of inquiry characteristic of pragmatism in which conceptual neuroethics questions have led to empirical studies whose results then raise additional conceptual questions that give rise to new empirical studies in a way that highlights the contributions of the humanities and the sciences. (shrink)

Common understandings of neuroethics, i.e., of its distinctive nature, are premised on two distinct sets of claims: (1) neuroscience can change views about the nature of ethics itself and neuroethics is dedicated to reaping such an understanding of ethics; (2) neuroscience poses challenges distinct from other areas of medicine and science and neuroethics tackles those issues. Critiques have rightfully challenged both claims, stressing how the first may lead to problematic forms of reductionism while the second relies on debatable assumptions about (...) the nature of bioethics specialization and development. Informed by philosophical pragmatism and our experience in neuroethics, we argue that these claims are ill-founded and should give way to pragmatist reconstructions. Namely, neuroscience, much like other areas of empirical research on morality, can provide useful information about the nature of morally problematic situations but it does not need to promise radical and sweeping changes to ethics based on neuroscientism. Furthermore, the rationale for the development of neuroethics as a specialized field need not to be premised on the distinctive nature of the issues it tackles or of neurotechnologies. Rather, it can espouse an understanding of neuroethics as both a scholarly and a practical endeavor dedicated to resolving a series of problematic situations raised by neurological and psychiatric conditions. (shrink)

The application of neurostimulation techniques such as deep brain stimulation —often called a brain pacemaker for neurological conditions like Parkinson's disease —has generated “currents of hope.” Building on this hope, there is significant interest in applying neurostimulation to psychiatric disorders such as major depression and obsessive-compulsive disorder. These emerging neurosurgical practices raise a number of important ethical and social questions in matters of resource allocation, informed consent for vulnerable populations, and commercialization of research.

Neuroethics is an interdisciplinary field that arose in response to novel ethical challenges posed by advances in neuroscience. Historically, neuroethics has provided an opportunity to synergize different disciplines, notably proposing a two-way dialogue between an ‘ethics of neuroscience’ and a ‘neuroscience of ethics’. However, questions surface as to whether a ‘neuroscience of ethics’ is a useful and unified branch of research and whether it can actually inform or lead to theoretical insights and transferable practical knowledge to help resolve ethical questions. (...) In this article, we examine why the neuroscience of ethics is a promising area of research and summarize what we have learned so far regarding its most promising goals and contributions. We then review some of the key methodological challenges which may have hindered the use of results generated thus far by the neuroscience of ethics. Strategies are suggested to address these challenges and improve the quality of research and increase neuroscience's usefulness for applied ethics and society at large. Finally, we reflect on potential outcomes of a neuroscience of ethics and discuss the different strategies that could be used to support knowledge transfer to help different stakeholders integrate knowledge from the neuroscience of ethics. (shrink)

In the debate on the ethics of the non-medical use of pharmaceuticals for cognitive performance enhancement in healthy individuals there is a clear division between those who view “cognitive enhancement” as ethically unproblematic and those who see such practices as fraught with ethical problems. Yet another, more subtle issue, relates to the relevance and quality of the contribution of scholarly bioethics to this debate. More specifically, how have various forms of speculation, anticipatory ethics, and methods to predict scientific trends and (...) societal responses augmented or diminished this contribution? In this paper, we use the discussion of the ethics of cognitive enhancement to explore the positive and negative contribution of speculation in bioethics scholarship. First, we review and discuss how speculation has relied on different sets of assumptions regarding the non-medical use of stimulants, namely: terminology and framing; scientific aspects such as efficacy and safety; estimates of prevalence and consequent normalization; and the need for normative reflection and regulatory guidelines. Second, three methodological guideposts are proposed to alleviate some of the pitfalls of speculation: acknowledge assumptions more explicitly and identify the value attributed to assumptions; validate assumptions with interdisciplinary literature; and adopt a broad perspective to promote more comprehensive reflection. We conclude that, through the examination of the controversy about cognitive enhancement, we can employ these methodological guideposts to enhance the value of contributions from bioethics and minimize potential epistemic and practical pitfalls in this case and perhaps in other areas of bioethical debate. (shrink)

The concept of free will has been heavily debated in philosophy and the social sciences. Its alleged importance lies in its association with phenomena fundamental to our understandings of self, such as autonomy, freedom, self-control, agency, and moral responsibility. Consequently, when neuroscience research is interpreted as challenging or even invalidating this concept, a number of heated social and ethical debates surface. We undertook a content analysis of media coverage of Libet’s et al.’s :623–642, 1983) landmark study, which is frequently interpreted (...) as posing a serious challenge to the existence of free will. Media descriptions of Libet et al.’s experiment provided limited details about the original study. Overall, many media articles reported that Libet et al.’s experiments undermined the existence of free will, despite acknowledging that several methodological limitations had been identified in the literature. A propensity to attribute greater credibility than warranted to neurobiological explanations could be at stake. (shrink)

There might be value in examining the phenomenon of free will, without attempting to solve the debate surrounding its existence. Studies have suggested that diminishing belief in free will increases cheating behavior and that basic physiological states such as appetite diminish free will. These findings, if robust, could have important philosophical and ethical implications. Accordingly, we aimed to critically review methodologies and results in the body of literature that speaks to the two following questions: whether certain factors can change belief (...) in free will or not and whether changes in belief in free will impact different attitudinal or behavioral factors or not. Searching the PubMed and PsycInfo databases with different keyword strategies supplemented with reference section searches, we found 52 relevant papers for review. For each distinct study, we extracted information regarding: sample characteristics and related analyses, procedures and methodology, factors investigated, results, and effect sizes. Overall, we found that the samples were heavily constituted of women, of students and younger participants, with little information about representation of ethnic minorities. Procedures and methodology relied strongly on the use of experimental manipulations and a wide array of scales, including scales created by researchers. Several studies suggest the static and consequential properties of belief in free will. However, these conclusions are restrained by numerous limitations of the supporting body of evidence and the absence of replication studies. (shrink)

Vulnerability is an important criterion to assess the ethical justification of the inclusion of participants in research trials. Currently, vulnerability is often understood as an attribute inherent to a participant by nature of a diagnosed condition. Accordingly, a common ethical concern relates to the participant’s decisionmaking capacity and ability to provide free and informed consent. We propose an expanded view of vulnerability that moves beyond a focus on consent and the intrinsic attributes of participants. We offer specific suggestions for how (...) relational aspects and the dynamic features of vulnerability could be more fully captured in current discussions and research practices. (shrink)

Gilbert and colleagues point out the discrepancy between the limited empirical data illustrating changes in personality following implantation of deep brain stimulating electrodes and the vast number of conceptual neuroethics papers implying that these changes are widespread, deleterious, and clinically significant. Their findings are reminiscent of C. P. Snow’s essay on the divide between the two cultures of the humanities and the sciences. This division in the literature raises significant ethical concerns surrounding unjustified fear of personality changes in the context (...) of DBS and negative perceptions of clinician-scientists engaged in DBS. These concerns have real world implications for funding future innovative, DBS trials aimed to reduce suffering as well as hampering true interdisciplinary scholarship. We argue that the philosophical tradition of pragmatism and the value it places on empirical inquiry, experiential knowledge, and inter-disciplinary scholarship – reflecting diverse ways of knowing – provides a framework to start to address the important questions Gilbert and colleagues raise. In particular, we highlight the importance of expert clinician knowledge in contributing to the neuroethical questions raised by Gilbert and colleagues. Finally, we provide illustrative examples of some of our interdisciplinary empirical research that demonstrate the iterative cycle of inquiry characteristic of pragmatism in which conceptual neuroethics questions have led to empirical studies whose results then raise additional conceptual questions that give rise to new empirical studies in a way that highlights the contributions of the humanities and the sciences. (shrink)

International media have reported cases of pregnant women who have had their children apprehended by social services, or who were incarcerated or forced into treatment programs based on a history of substance use or lack of adherence to addiction treatment programs. Public discourse on the biology of addiction has been criticized for generating stigma and a diminished perception of self-control in individuals with an addiction, potentially contributing to coercive approaches and criminalization of women who misuse substances during pregnancy. We explored (...) whether this is the case based on literature from social psychology, ethics, addiction research, science communication, and philosophy. The literature shows that the relationship between public discourse on biological aspects of addiction and issues such as stigma and perceptions of diminished self-control are unclear, largely due to the complexity of these phenomena. However, concerns about the biological approach are nevertheless legitimate given the broader social and policy context of women’s health. (shrink)

Research conducted on Brain-Computer Interfaces has grown considerably during the last decades. With the help of BCIs, users can gain a wide range of functions. Our aim in this paper is to analyze the impact of BCIs on autonomy. To this end, we introduce three abilities that most accounts of autonomy take to be essential: the ability to use information and knowledge to produce reasons; the ability to ensure that intended actions are effectively realized ; and the ability to enact (...) intentions within concrete relationships and contexts. We then consider the impact of BCI technology on each of these abilities. Although on first glance, BCIs solely enhance self-determination because they restore or improve abilities, we will show that there are other positive, but also negative impacts on user autonomy, which require further philosophical and ethical discussions. (shrink)

Gilbert and colleagues point out the discrepancy between the limited empirical data illustrating changes in personality following implantation of deep brain stimulating electrodes and the vast number of conceptual neuroethics papers implying that these changes are widespread, deleterious, and clinically significant. Their findings are reminiscent of C. P. Snow’s essay on the divide between the two cultures of the humanities and the sciences. This division in the literature raises significant ethical concerns surrounding unjustified fear of personality changes in the context (...) of DBS and negative perceptions of clinician-scientists engaged in DBS. These concerns have real world implications for funding future innovative, DBS trials aimed to reduce suffering as well as hampering true interdisciplinary scholarship. We argue that the philosophical tradition of pragmatism and the value it places on empirical inquiry, experiential knowledge, and inter-disciplinary scholarship – reflecting diverse ways of knowing – provides a framework to start to address the important questions Gilbert and colleagues raise. In particular, we highlight the importance of expert clinician knowledge in contributing to the neuroethical questions raised by Gilbert and colleagues. Finally, we provide illustrative examples of some of our interdisciplinary empirical research that demonstrate the iterative cycle of inquiry characteristic of pragmatism in which conceptual neuroethics questions have led to empirical studies whose results then raise additional conceptual questions that give rise to new empirical studies in a way that highlights the contributions of the humanities and the sciences. (shrink)

We investigated the acceptability and frequency of the use of cognitive enhancement (CE) drugs and three different types of academic misconduct (plagiarism, cheating in exams, and falsifying/fabricating data). Data from a web-based survey among German university students were used. Moral acceptability was relatively low for CE drug use and moderate for academic misconduct, while the correlation of their respective acceptability was moderately weak. Prevalence of CE drug use was lower than for academic misconduct and (very) lightly correlated with the prevalence (...) of plagiarism and fabrication/falsification. Acceptability of the investigated behaviors was associated with higher prevalence rates of each behavior. (shrink)

There is substantial evidence that methylphenidate (MPH; Ritalin), is being used by healthy university students for non-medical motives such as the improvement of concentration, alertness, and academic performance. The scope and potential consequences of the non-medical use of MPH upon healthcare and society bring about many points of view.

BackgroundFunctional neurodiagnostics could allow researchers and clinicians to distinguish more accurately between the unresponsive wakefulness syndrome and the minimally conscious state. It remains unclear how it informs surrogate decision-making.ObjectiveTo explore how the next of kin of patients with disorders of consciousness interpret the results of a functional neurodiagnostics measure and how/why their interpretations influence their attitudes towards medical decisions.Methods and SampleWe conducted problem-centered interviews with seven next of kin of patients with DOC who had undergone a functional HD-EEG examination at (...) a neurological rehabilitation center in Germany. The examination included an auditory oddball paradigm and a motor imagery task to detect hidden awareness. We analyzed the interview transcripts using structuring qualitative content analysis.ResultsRegardless of the diagnostic results, all participants were optimistic of the patients’ meaningful recovery. We hypothesize, that participants deal with the results of examinations according to their belief system. Thus, an unfavorable evaluation of the patient’s state had the potential to destabilize the participant’s belief system. To re-stabilize or to prevent the destabilization of their belief system, participants used different strategies. Participants accepted a “positive” HD-EEG result since it stabilized their belief system.ConclusionWe hypothesize, that a group of next of kin of patients with DOC deals with functional neurodiagnostics results on the basis of the result’s value and their high hope that the patient will recover meaningfully. A psychological mechanism seems to moderate the impact of functional neurodiagnostics on surrogate treatment decisions. (shrink)

Vulnerability is an important criterion to assess the ethical justification of the inclusion of participants in research trials. Currently, vulnerability is often understood as an attribute inherent to a participant by nature of a diagnosed condition. Accordingly, a common ethical concern relates to the participant’s decisionmaking capacity and ability to provide free and informed consent. We propose an expanded view of vulnerability that moves beyond a focus on consent and the intrinsic attributes of participants. We offer specific suggestions for how (...) relational aspects and the dynamic features of vulnerability could be more fully captured in current discussions and research practices. (shrink)

In the article “Nudging and Informed Consent”, Cohen argues that the use of “nudging” by physicians in the clinical encounter may be ethically warranted because it results in an informed consent where obligations for beneficence and respect for autonomy are both met. However, the author's overenthusiastic support for nudging and his quick dismissal of shared decision-making leads him to assume that “soft” manipulation is un-problematic and that “wisdom” on the side of medical professionals will suffice to guard against abuse. Opposing (...) this view, we propose that: 1) patient preferences and values should not be boiled down to rational or irrational decisions based on cognitive reasoning alone, 2) potential threats to the physician-patient must be mitigated and could be minimized by employing alternative strategies that acknowledge the impact of cognitive heuristics in shaping decision-making but maintain transparency and trust, and 3) patient preferences and values can be legitimately influenced only under specific circumstances. The latter include: (1) exhaustion of other means; (2) evidence that nudging is effective in a specific context; (3) evidence of clear and active public misinformation (e.g., industry promoting smoking); (4) explicit pubic dialogue between various stakeholders including medical professional societies about nudging; (5) upholding shared decision-making as a preferred approach; and (6) a rich understanding of clinical reality beyond the simple dichotomy of beneficence-autonomy. (shrink)

In the care of patients with disorders of consciousness (DOC), some ethical difficulties stem from the challenges of accurate diagnosis and the uncertainty of prognosis. Current neuroimaging research on these disorders could eventually improve the accuracy of diagnoses and prognoses and therefore change the context of end-of-life decision making. However, the perspective of healthcare professionals on these disorders remains poorly understood and may constitute an obstacle to the integration of research. We conducted a qualitative study involving healthcare professionals from an (...) acute care university medical center. A short questionnaire captured demographic data as well as the experience of participants with DOC patients. A semi-structured interview was used to explore attitudes toward ethical issues identified in a previous literature review. Qualitative content analysis of interviews was conducted with the NVivo software. Accurate diagnosis among DOC is often regarded as a challenge, but this was generally not the case for our participants because most reported high confidence in DOC diagnoses. However, participants reported struggling with prognosis, especially because of its essential role for end-of-life decision making and communication with families. Variability of opinion between healthcare professionals was reported and identified by some as a minor issue while others stressed how families struggle with different medical opinions. End-of-life decision making encompassed a large proportion of ethical challenges in these patients, and the removal of artificial nutrition and hydration created significant discomfort in a minority of participants. The concept of futility was subject to wide-ranging understandings with both favorable and unfavorable opinions. Our data suggest that to ensure the incorporation of new evidence-based advances, attention should be directed to the real-world practices and challenges of accurate diagnosis and prognosis. Given pervasive challenges in end-of-life care, we recommend improved training of healthcare professionals in the care of patients with DOC, particularly in end-of life care, understanding the context of decision making, and determining how to optimally integrate new neuroscience research on the care of patients with DOC. (shrink)

Concerns about the possibility of a sharp rise in the prevalence of Alzheimer’s disease in Western nations have led to both the significant deployment of resources and the development of national research and healthcare plans. Although often focused on treatment, substantial efforts have also been dedicated toward preventing or delaying AD onset. As a result, recent technological and biomedical advances have greatly improved the understanding of AD pathophysiology. While some new tests can assess only risk ), some tests for certain (...) biomarkers (e.g., amyloid beta accumulation in the brain detected via positron... (shrink)

Since the 1960s, scientists, engineers, and healthcare professionals have developed brain–computer interface (BCI) technologies, connecting the user’s brain activity to communication or motor devices. This new technology has also captured the imagination of publics, industry, and ethicists. Academic ethics has highlighted the ethical challenges of BCIs, although these conclusions often rely on speculative or conceptual methods rather than empirical evidence or public engagement. From a social science or empirical ethics perspective, this tendency could be considered problematic and even technocratic because (...) of its disconnect from publics. In response, our trinational survey (Germany, Canada, and Spain) reports public attitudes toward BCIs (N = 1,403) on ethical issues that were carefully derived from academic ethics literature. The results show moderately high levels of concern toward agent-related issues (e.g., changing the user’s self) and consequence-related issues (e.g., new forms of hacking). Both facets of concern were higher among respondents who reported as female or as religious, while education, age, own and peer disability, and country of residence were associated with either agent-related or consequence-related concerns. These findings provide a first look at BCI attitudes across three national contexts, suggesting that the language and content of academic BCI ethics may resonate with some publics and their values. (shrink)

Deep brain stimulation (DBS) has been proposed as a potential treatment of drug addiction on the basis of its effects on drug self-administration in animals and on addictive behaviours in some humans treated with DBS for other psychiatric or neurological conditions. DBS is seen as a more reversible intervention than ablative neurosurgery but it is nonetheless a treatment that carries significant risks. A review of preclinical and clinical evidence for the use of DBS to treat addiction suggests that more animal (...) research is required to establish the safety and efficacy of the technology and to identify optimal treatment parameters before investigating its use in addicted persons. Severely addicted persons who try and fail to achieve abstinence may, however, be desperate enough to undergo such an invasive treatment if they believe that it will cure their addiction. History shows that the desperation for a cure of addiction can lead to the use of risky medical procedures before they have been rigorously tested. In the event that DBS is used in the treatment of addiction, we provide minimum ethical requirements for clinical trials of its use in the treatment of addiction. These include: restrictions of trials to severely intractable cases of addiction; independent oversight to ensure that patients have the capacity to consent and give that consent on the basis of a realistic appreciation of the potential benefits and risks of DBS; and rigorous assessments of the effectiveness and safety of this treatment compared to the best available treatments for addiction. (shrink)

Stigma can influence the prevention and identification of fetal alcohol spectrum disorder, a leading cause of developmental delay in North America. Understanding the effects of public health practices and policies on stigma is imperative. We reviewed social science and biomedical literatures to understand the nature of stigma in FASD and its relevance from an ethics standpoint in matters of health practices and policies. We propose a descriptive model of stigma in FASD and note current knowledge gaps; discuss the ethical implications (...) of stigma based on two distinct criteria ; and describe two cases and the concerns associated with inadvertent stigmatization by public health initiatives for FASD. We recommend further empirical and ethical analyses to examine whether public health policies and practices inadvertently stigmatize and impact the success of public health initiatives and programs for FASD. (shrink)

Patient engagement in healthcare is increasingly discussed in the literature, and initiatives engaging patients in quality improvement activities, organizational design, governance, and research are becoming more and more common and have even become mandatory for certain health institutions. Here we discuss a number of ethical challenges raised by this engagement from patients from the perspectives of research, organizational/quality improvement practices, and patient experiences, while offering preliminary recommendations as to how to address them. We identified three broad categories of ethical issues (...) that intersect between the different types of patient engagement: establishing a shared vision about goals of patient engagement and respective roles; the process and method of engaging with patients; and practical aspects of patient engagement. To explain these issues, we build from our personal, professional, and academic experiences, as well as traditions such as pragmatism and hermeneutics that stress the importance of participation, empowerment, and engagement. Patient engagement can be highly valuable at numerous levels, but particular attention should be paid to the process of engaging with patients and related ethical issues. Some lessons from the literature on the ethics of participatory research can be translated to organizational and quality improvement practices. (shrink)

Donepezil, an acetylcholinesterase inhibitor used in the treatment of Alzheimer's disease, has been widely cited in media and bioethics literature on cognitive enhancement (CE) as having the potential to improve the cognitive ability of healthy individuals. In both literatures, this claim has been repeatedly supported by the results of a small study published by Yesavage et al. in 2002 on non-demented pilots (30-70 years old). The factors contributing to this specific interpretation of this study's results are unclear.

Brain death or determination of death based on the neurological criterion has been an enduring source of controversy in academic and clinical circles. The controversy chiefly concerns how death is defined, and it also bears on the justification of the proposed criteria for death determination and their interpretation. Part of the controversy on brain death and death determination stems from disputed crucial medical facts, but in this paper I formulate another hypothesis about the nature of ongoing controversies. At stake is (...) a misunderstood relationship between, on the one hand, the nature of our lay views about death and, on the other hand, the nature of scientific insights into death and its determination. The misunderstanding of this relationship has partly anchored the controversy and continues to fuel it. Based on a perspective inspired by pragmatism, which stresses the positive contribution of science to ethical and policy debates but also challenges different forms of scientism in science and philosophy found in foundationalist interpretations, I scrutinize three different stances regarding the relationship between lay and scientific perspectives about the definition of death: foundational lay views, foundational expert views, and co-evolving views. I argue that only the latter is sustainable given recent challenges to foundationalist interpretations. (shrink)

Background: Fetal alcohol spectrum disorder, a complex diagnosis that includes a wide range of neurodevelopmental disabilities, results from exposure to alcohol in the womb. FASD remains poorly understood by Canadians, which could contribute to reported stigma faced by both people with FASD and women who drink alcohol while pregnant. Methods: To better understand how information about FASD is presented in the public sphere, we conducted content analysis of 286 articles from ten major English-language Canadian newspapers. We used inductive coding to (...) derive a coding guide from the data, and then iteratively applied identified codes back onto the sample, checking inter-coder reliability. Results: We identified six major themes related to clinical and scientific media content: 1) prevalence of FASD and of women’s alcohol consumption; 2) research related to FASD; 3) diagnosis of FASD; 4) treatment of FASD and maternal substance abuse; 5) primary disabilities associated with FASD; and 6) effects of alcohol exposure during pregnancy. Discussion: Across these six themes, we discuss three instances of ethically consequential exaggeration and misrepresentation: 1) exaggeration about FASD rates in Indigenous communities; 2) contradiction between articles about the effects of prenatal alcohol exposure; and 3) scientifically accurate information that neglects the social context of alcohol use and abuse by women. Respectively, these representations could lead to harmful stereotyped beliefs about Indigenous peoples, might generate confusion about healthy choices during pregnancy, and may unhelpfully inflame debates about sensitive issues surrounding women’s choices. (shrink)

:The question as to whether people with an addiction have control over their addiction, and voluntarily decide to use substances is an ongoing source of controversy in the context of research on addiction, health policy and clinical practice. We describe and discuss a set of five challenges for further research into voluntariness based on our own research experiences and those of others.

BackgroundResearch ethics and the measures deployed to ensure ethical oversight of research are vested with extremely important ethical and practical goals. Accordingly, these measures need to function effectively in real-world research and to follow high level standards.MethodsWe examined approved consent forms for Magnetic Resonance Imaging and functional Magnetic Resonance Imaging studies approved by Canadian research ethics boards .ResultsWe found evidence of variability in consent forms in matters of physical and psychological risk reporting. Approaches used to tackle the emerging issue of (...) incidental findings exposed extensive variability between and within research sites.ConclusionThe causes of variability in approved consent forms and studies need to be better understood. However, mounting evidence of administrative and practical hurdles within current ethics governance systems combined with potential sub-optimal provision of information to and protection of research subjects support other calls for more scrutiny of research ethics practices and applicable revisions. (shrink)